Finally have a diagnosis

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healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 9/15/2008 6:04 PM (GMT -6)   
Hi Rhonda and Gretchen,
 
I posted a few days ago awaiting results of my lumbar puncture.  You both were kind enough to respond to my post.  My Neurologist told me today that I do have MS.  I tested negative for everything else and hit all 5 tests they did for the MS.  He took lots of time with my husband and I and gave me time through tears to compose myself.  I have to say that we are kind of relieved to finally have an name for all this madness.  The doctor said he has a lot of people say to him "so I'm not crazy there is something wrong".  He first put me on a baby dose of neurontin for my facial and mouth tingle.  Since I have such a high sensativity to meds he at least listened and is starting me small.  He is putting me on Rebif.  A nurse will be contacting me shortly to come and train me on the ins and outs of the drug.  My doctor also said there are other drugs if this one isn't right for me.  I am sure I will be more of a regular with lots of questions for everyone on this forum now that I know what I have.  Thanks so much for the support.
 
Cindy

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/15/2008 7:23 PM (GMT -6)   
Hey Cindy

I'm so so sorry for u'r dx!! I can't begin to tell u how much my heart goes out to u. There is that sense of relief in knowing, but the knowlege is not such a comfort. We will be right here for u friend. Ask any questions u may have or just feel free to post a vent anytime u'd like. Sometimes we all just need to be heard...we will listen. Yes, there are other meds out there and it may be beneficial to u to do some research on those should rebif turn out not to be the drug for u. The others are Avonex, Copaxone and Betaseron. Take care friend and take some time to just absorb this. Don't expect to be 'ok' or bouce back quickly. This is major and u have the right to take u'r time to go thru all the emotions u are going to feel. We will be here with u thru it all.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 9/15/2008 9:48 PM (GMT -6)   

Oh Cindy!!

I am so so so sorry.  I am sure this was quite a shock for you.  This is a tough disease, but you can live with it.  It took me a long time to adjust to the idea of MS.  Please feel free to ask lots of questions.  Feel free to vent and complain.  If you want to email me you may do that also.  I am glad to hear that you are starting a progression therapy.  You will find that you feel like you are doing something to slow this disease down.  I remember thinking how good that felt when I started copaxone.  Learning to do shots is no big deal either.  You will find that after you have given that first shot, you are so proud of that.  On the home page of this board there is an article that talks about living with chronic illness taking courage.  Take some time to read that and know you have already shown that sort of courage. 

I want to wish you the very best of luck.  I hope you post often and let us get to know you. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 9/16/2008 5:09 AM (GMT -6)   

Thank you both for your kind reply.

I have to say that I really knew I had this and did a lot of not being ok for the last 6 weeks or so.  I am sure there will be more to come.  I will be posting and asking lots of questions.  I have my own business as a massage therapist and also work part time in a chiropractors office.  I am hoping to keep both of those.  However the chiropractors office is harder on my body.  I might have to just go to my own practice.  Day by day I guess.

Thanks again,

Cindy


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 9/16/2008 7:11 AM (GMT -6)   
ooooh ooooh oooooh I will help you with anything for a massage!!!!! 
 
Ok seriously though, Cindy, it took me a LONG time to be ok with this.  And even then I can't seem to stay in the OK part.  I just take it one day at a time and sometimes one hour at a time.  I try real hard to remain positive and when I am not in the OK part, I work at getting back there.  Be gentle to yourself, the emotional part can take a long time. 
 
I am a fifth grade teacher, it too is a very physically demanding job.  I am on my feet for the better part of 6 hours a day.  Just do the best you can.  Perhaps your own practice would be the way to go but don't change anything right now.  Just try to get used to the shock of being diagnosed.
Gretchen       co-moderator MS board       diagnosed with MS July 2006


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 9/16/2008 10:20 AM (GMT -6)   

Gretchen,

If you are in Ohio I would be happy to give you a massage.  The thing is that after being diagnosed with fibromyalgia 2 years ago, I have had a lot of practice at trying to be positive every day.  I have already had the...I am not ok times.  Right now today I am thankful it isn't something worse and that I know now what this is.  I am sure that the reality phase is short to follow.  I will be practicing more on living in the now.  Hard to do but I will try.

Thanks again and have a great day.

Cindy


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/16/2008 10:35 AM (GMT -6)   
Hey Cindy

Good! Just take it one day at a time and know that there may be some hard days coming...but u won't be alone then either. There is some comfort in having an answer i'm sure, but there is that finalization that THIS is it. That will be hard to take too friend. Just know that sooner than u think those good days will be back and u'll begin to see that even tho u may need to make some adjustments, u can and will have a full life with ms...and pretty soon ms will not be in the forefront of u'r thoughts.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*

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